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Strict Standards: Only variables should be assigned by reference in /home/billbmn/public_html/wcmi1/plugins/content/fb_tw_plus1/fb_tw_plus1.php on line 49What is It like? - WhatCausesMentalIllness.comStrict Standards: Only variables should be assigned by reference in /home/billbmn/public_html/wcmi1/plugins/system/hotlogin/tmpl/default.php on line 12

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Word Cloud

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In this context, I am using the Phrase 'Lived Experience' to refer to the experience of living or having lived with what is likely to be labelled, either by self identification or external sources as 'Mental illness'.

This is intended to be deliberately broad and vague, and implies absolutely nothing, for good or ill, about those experiences themselves.

It is also where I derived my contribution to the long list of flawed labels for people who have had those experiences - 'The Experienced'.

"te two most common ‘symptom types’ in psychosis are firstly ‘auditory hallucinations’ and secondly ‘delusions’. Over the last twenty years the Hearing Voices Movement has helped challenge conventional approaches to “auditory hallucinations” by reframing them as “voice-hearing experiences”. The Hearing Voices Movement has demonstrated the broad range of ways to integrate voice hearing into one’s life. Due to this there has been great progress in developing research on the experience of voice hearing and self-help networks. This has lead to innovations in both psychotherapeutic and self help knowledge for voice hearing (see Romme et al. 2009).

"Delusions (or perhaps more respectful terms such as alternative realities or unusual beliefs), the second major group of psychotic experiences, have not had as much energy devoted to them in terms of self help initiatives as voice hearing. Cognitive behavioural therapy has focused on the problem of ‘delusional thinking’, and has sought to change it to more rational thinking, through teaching people to test out their theories against empirical evidence. However this therapy movement has been largely unable to translate this into collaborations with self help groups and has limitations when working with people who value their belief systems and who are not motivated to challenge them.

"My personal experience

"I trained as a psychologist in the 1990s keen to promote psychological approaches to experiences that are labelled psychosis and in particular what is termed “delusional thinking”. I prefer to use terms like unusual beliefs, paranoia and alternative realities because they are terms people find less judgemental.

"I felt sure that if we really listened to people and helped them find activities where they would feel valued, both their unusual beliefs would be shown to have a logic to them, and people would be more likely to find ways to connect with others and recover a valued life. This was influenced by my own experience of psychosis when I was eighteen years old. I had witnessed and experienced how institutions and social isolation did a lot more damage than unusual beliefs that were seen by professionals as ‘delusions'.

"Unusual beliefs are meaningful and symbolic, they are not merely the bizarre mis-firings of a faulty brain

"I became fascinated with unusual or psychotic beliefs after my experiences as an eighteen year old where I became convinced that I was a spy for the British (working against the Russians) and that I was involved in a battle between good and evil. The psychiatric treatment I experienced was unhelpful, in that it focused on the form of my confusion but not the content. I was diagnosed with Hebrephrenic schizophrenia, hospitalised several times and put on a long-term neuroleptic drug regime.

"It always seemed to me that my beliefs were meaningful and possessed an internal logic and had they been listened to sympathetically, this would have been the greatest aid to recovery. Looking back this time period was one of emotional complexity. My first girlfriend had left me and this culminated in a great deal of grief. This, in turn, related to unresolved feelings concerning my mother's illness when I was eleven: my mother had had a brain haemorrhage and an operation that had resulted in physical and mental disability. I believe that I experienced emotional problems after this time, which I had buried and that were only re-awoken when my relationship with my first girlfriend broke up.

Possible meanings of my beliefs

There are many possible layers of meaning to my own beliefs. For example, I believed I had a gadget in my chest that was being used to control me and I also believed that a lot of adults around me were robot-like automatons. This may have reflected my fears of losing my sense of self and drowning in social conformity. I felt a lot of pressure to be someone interesting and yet I had found myself in a dull and boring career and without friends or a social life.

"Secondly, the robot fantasy may have also been a dream-like flashback to my mother’s illness. During my mother’s operation, she had a metal plate placed in her skull. I remember the first time I saw her after her operation, she seemed to resemble a robot with her shaved head, and pipes which were drips emanating from her body. The first time I saw her post-operation, she tried to wink at me and her eye got stuck like a rusty machine.

"I also had beliefs about being involved in a cold war between two different cultures, East and West. My girlfriend had been from an African Carribean background and her mother had not been in favour of the relationship, so I had wondered about tensions between cultural groups being the reason for the relationship break up. Perhaps my East West cold war beliefs reflected this conflict. In retrospect, I feel that these beliefs represent powerful metaphors in my quest to find out who I was and how to understand my past and present.

Like powerful dreams, my unusual beliefs or delusions have subsequently influenced who I have become without taking over my life. I believe this is because I was fortunate enough to get away from psychiatric services and find valued social relationships where I could develop my social skills and responsibilities."

This module is about people’s experiences of psychosis. Many of the people we interviewed had, at some point in their lives, received a diagnosis of schizophrenia. However there were a number of people we spoke to who had never received this diagnosis but who had experienced psychosis i.e. hearing or seeing things or holding unusual beliefs which other people don’t see or share. We interviewed 34 people (31 people with direct experience and three carers) about their experiences. Select some of the key topics below, choose from the complete list of topics to the left, or explore all the interviews in 'People's Stories' section below.

Listening to Madness

Why some mentally ill patients are rejecting their medication and making the case for 'mad pride.'

We don't want to be normal," Will Hall tells me. The 43-year-old has been diagnosed as schizophrenic, and doctors have prescribed antipsychotic medication for him. But Hall would rather value his mentally extreme states than try to suppress them, so he doesn't take his meds. Instead, he practices yoga and avoids coffee and sugar. He is delicate and thin, with dark plum polish on his fingernails and black fashion sneakers on his feet, his half Native American ancestry evident in his dark hair and dark eyes. Cultivated and charismatic, he is also unusually energetic, so much so that he seems to be vibrating even when sitting still.

I met Hall one night at the offices of the Icarus Project in Manhattan. He became a leader of the group—a "mad pride" collective—in 2005 as a way to promote the idea that mental-health diagnoses like bipolar disorder are "dangerous gifts" rather than illnesses. While we talked, members of the group—Icaristas, as they call themselves—scurried around in the purple-painted office, collating mad-pride fliers. Hall explained how the medical establishment has for too long relied heavily on medication and repression of behavior of those deemed "not normal." Icarus and groups like it are challenging the science that psychiatry says is on its side. Hall believes that psychiatrists are prone to making arbitrary distinctions between "crazy" and "healthy," and to using medication as tranquilizers.

"For most people, it used to be, 'Mental illness is a disease—here is a pill you take for it'," says Hall. "Now that's breaking down." Indeed, Hall came of age in the era of the book "Listening to Prozac." He initially took Prozac after it was prescribed to him for depression in 1990. But he was not simply depressed, and he soon had a manic reaction to Prozac, a not uncommon side effect. In his frenetic state, Hall went on to lose a job at an environmental organization. He soon descended into poverty and started to hear furious voices in his head; he walked the streets of San Francisco night after night, but the voices never quieted. Eventually, he went to a mental-health clinic and was swiftly locked up. Soon after, he was diagnosed with schizophrenia. He was put in restraints and hospitalized against his will, he says. For the next year, he bounced in and out of a public psychiatric hospital that he likens to a prison. The humiliation and what he experienced as the failure of the medication were what turned him against traditional treatment. Since then, Hall has been asking whether his treatment was really necessary. He felt sloshily medicated, as if he couldn't really live his life.

Hall and Icarus are not alone in asking these questions. They are part of a new generation of activists trying to change the treatment and stigma attached to mental illness. Welcome to Mad Pride, a budding grassroots movement, where people who have been defined as mentally ill reframe their conditions and celebrate unusual (some call them "spectacular") ways of processing information and emotion.

Just as some deaf activists prefer to embrace their inability to hear rather than "cure" it with cochlear implants, members of Icarus reject the notion that the things that are called mental illness are simply something to be rid of. Icarus members cast themselves as a dam in the cascade of new diagnoses like bipolar and ADHD. The group, which now has a membership of 8,000 people across the U.S., argues that mental-health conditions can be made into "something beautiful." They mean that one can transform what are often considered simply horrible diseases into an ecstatic, creative, productive or broadly "spiritual" condition. As Hall puts it, he hopes Icarus will "push the emergence of mental diversity."

Embracing "mental diversity" is one thing, but questioning the need for medication in today's pill-popping world is controversial—and there have been instances in which those who experience mental extremes harm themselves or others. Icaristas argue that some of the severely mentally ill may avoid taking medication, because for some the drugs don't seem to help, yet produce difficult side effects. And while some side effects like cognitive impairment are surely debilitating, others are more subtle, such as the vague feeling that people are not themselves. Icaristas call themselves "pro-choice" about meds—some do take their drugs, but others refuse.

Mad pride has its roots in the mad-liberation movement of the 1960s and '70s, when maverick psychiatrists started questioning the boundaries between sane and insane, and patients began to resist psychiatric care that they considered coercive. But today the emphasis is on support groups, alternative health and reconsidering diagnostic labeling that can still doom patients to a lifetime of battling stigma. Icarus also frames its mission as a somewhat literary one—helping "to navigate the space between brilliance and madness." Even the name Icarus, with its origin in the Greek myth of a boy who flew to great heights (brilliance) but then came too close to the sun (madness) and hurtled to his death, has a literary cast.

Although Icarus and Hall focus on those diagnosed as mentally ill, their work has much broader implications. Talking to Hall, I was acutely aware just how much their stance reflects on the rest of us—the "normal" minds that can't read through a book undistracted, the lightly depressed people, the everyday drunks who tend toward volatility, the people who "just" have trouble making eye contact, those ordinary Americans who memorize every possible detail about Angelina Jolie.

After all, aren't we all more odd than we are normal? And aren't so many of us one bad experience away from a mental-health diagnosis that could potentially limit us? Aren't "normal" minds now struggling with questions of competence, consistency or sincerity? Icarus is likewise asking why we are so keen to correct every little deficit—it argues that we instead need to embrace the range of human existence.

While some critics might view Icaristas as irresponsible, their skepticism about drugs isn't entirely unfounded. Lately, a number of antipsychotic drugs have been found to cause some troubling side effects.

There are, of course, questions as to whether mad pride and Icarus have gone too far. While to his knowledge no members have gravely harmed themselves (or others), Hall acknowledges that not everyone can handle the Icarus approach. "People can go too fast and get too excited about not using medication, and we warn people against throwing their meds away, being too ambitious and doing it alone," he says.

But is this stance the answer? Jonathan Stanley, a director of the Treatment Advocacy Center, a nonprofit working to provide treatment for the mentally ill, is somewhat critical. Stanley, who suffers from bipolar illness with psychotic features, argues that medication is indispensable for people with bipolar disease or with schizophrenia. Stanley's group also supports mandatory hospitalization for some people suffering severe mental illness—a practice that Icarus calls "forced treatment."

Scholars like Peter Kramer, author of "Listening to Prozac" and "Against Depression," also take a darker view of mental extremes. "Psychotic depression is a disease," Kramer says. As the intellectual who helped to popularize the widespread use of antidepressants, Kramer is nonetheless enthusiastic about Icarus as a community for mad pride. Yet he still argues that mental-health diagnoses are very significant. "In an ideal world, you'd want good peer support like Icarus—for people to speak up for what's right for them and have access to resources—and also medication and deep-brain stimulation," he says.

For his part, Hall remains articulate, impassioned and unmedicated. He lives independently, in an apartment with a roommate in Oregon, where he is getting a master's in psychology at a psychoanalytic institute. He maintains a large number of friendships, although his relationships, he says, are rather tumultuous.

Nevertheless, it's not so easy. Hall periodically descends into dreadful mental states. He considers harming himself or develops paranoid fantasies about his colleagues and neighbors. Occasionally, he thinks that plants are communicating with him. (Though in his mother's Native American culture, he points out, this would be valued as an ability to communicate with the spirit world.)

On another night, I had dinner with eight Icarus members at a Thai restaurant in midtown Manhattan. Over Singha beer, they joked about an imaginary psychoactive medication called Sustain, meant to cure "activist burnout." It was hard to imagine at the dinner what Hall had suffered. While he and his "mad" allies were still clearly outsiders, they had taken their suffering and created from it an all-too-rare thing: a community.

Glimpses - Our Experiences with Mental Illness

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Strict Standards: Only variables should be assigned by reference in /home/billbmn/public_html/wcmi1/components/com_sef/sef.router.php on line 115

Strict Standards: Only variables should be assigned by reference in /home/billbmn/public_html/wcmi1/components/com_sef/joomsef.php on line 69

Strict Standards: Only variables should be assigned by reference in /home/billbmn/public_html/wcmi1/components/com_sef/joomsef.php on line 73

Strict Standards: Only variables should be assigned by reference in /home/billbmn/public_html/wcmi1/administrator/components/com_sef/classes/seftools.php on line 949

Strict Standards: Only variables should be passed by reference in /home/billbmn/public_html/wcmi1/components/com_sef/joomsef.php on line 378

Strict Standards: Only variables should be assigned by reference in /home/billbmn/public_html/wcmi1/components/com_sef/sef.ext.php on line 68

Strict Standards: Only variables should be assigned by reference in /home/billbmn/public_html/wcmi1/components/com_sef/joomsef.php on line 1527

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Strict Standards: Only variables should be assigned by reference in /home/billbmn/public_html/wcmi1/components/com_sef/sef.router.php on line 115

Strict Standards: Only variables should be assigned by reference in /home/billbmn/public_html/wcmi1/components/com_sef/joomsef.php on line 69

Strict Standards: Only variables should be assigned by reference in /home/billbmn/public_html/wcmi1/components/com_sef/joomsef.php on line 73

Strict Standards: Only variables should be assigned by reference in /home/billbmn/public_html/wcmi1/administrator/components/com_sef/classes/seftools.php on line 949

Strict Standards: Only variables should be passed by reference in /home/billbmn/public_html/wcmi1/components/com_sef/joomsef.php on line 378

Strict Standards: Only variables should be assigned by reference in /home/billbmn/public_html/wcmi1/components/com_sef/sef.ext.php on line 68

Strict Standards: Only variables should be assigned by reference in /home/billbmn/public_html/wcmi1/components/com_sef/joomsef.php on line 1527

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